Associations between advanced cancer patients' survival and family caregiver presence and burden

J Nicholas Dionne-Odom, Jay G Hull, Michelle Y Martin, Kathleen Doyle Lyons, Anna T Prescott, Tor Tosteson, Zhongze Li, Imatullah Akyar, Dheeraj Raju, Marie A Bakitas, J Nicholas Dionne-Odom, Jay G Hull, Michelle Y Martin, Kathleen Doyle Lyons, Anna T Prescott, Tor Tosteson, Zhongze Li, Imatullah Akyar, Dheeraj Raju, Marie A Bakitas

Abstract

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.

Keywords: Advanced cancer; family caregivers; patient survival.

© 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Figures

Figure 1
Figure 1
Patient survival curves by caregiver coparticipant presence/absence. Cox proportional hazards model with no covariates.
Figure 2
Figure 2
Adjusted survival curves by caregiver and marital status. Cox proportional hazards model adjusted for patient age, gender, and presence of an advance directive and/or durable power of attorney.
Figure 3
Figure 3
Adjusted survival curves by high and low caregiver burden using median split. Cox proportional hazards model adjusted for intervention group.

References

    1. Bakitas, M. A. , Tosteson T. D., Li Z., Lyons K. D., Hull J. G., Li Z., et al. 2015. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. J. Clin. Oncol. 33:1438–1445.
    1. Dionne‐Odom, J. N. , Azuero A., Lyons K. D., Hull J.G., T. Tosteson, Li Z., et al. 2015. Benefits of Early Versus Delayed Palliative Care to Informal Family Caregivers of Patients With Advanced Cancer: outcomes From the ENABLE III Randomized Controlled Trial. J. Clin. Oncol. 33:1446–1452.
    1. Dunning, T. 2012. Natural experiments in the Social Sciences: a design‐based approach. Cambridge University Press, New York.
    1. Yabroff, K. R. , and Kim Y.. 2009. Time costs associated with informal caregiving for cancer survivors. Cancer 115(18 Suppl):4362–4373.
    1. Stenberg, U. , Ruland C. M., and Miaskowski C.. 2010. Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19:1013–1025.
    1. Institute of Medicine . Retooling for an aging America: building the health care workforce. National Academies Press, Washington, DC2008.
    1. AARP with the United Hospital Fund . 2012. Home alone: family caregivers providing complex chronic care. AARP Public Policy Institute, Washington DC.
    1. van Ryn, M. , Sanders S., Kahn K., et al. 2011. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psychooncology 20:44–52.
    1. Adelman, R. D. , Tmanova L. L., Delgado D., Dion S., and Lachs M. S.. 2014. Caregiver burden: a clinical review. JAMA 311:1052–1060.
    1. Hudson, P. L. , Thomas K., Trauer T., Remedios C., and Clarke D.. 2011. Psychological and social profile of family caregivers on commencement of palliative care. J. Pain Symptom Manage. 41:522–534.
    1. Hodges, L. J. , Humphris G. M., and Macfarlane G.. 2005. A meta‐analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc. Sci. Med. 60:1–12.
    1. Palos, G. R. , Mendoza T. R., Liao K. P., et al. 2011. Caregiver symptom burden: the risk of caring for an underserved patient with advanced cancer. Cancer 117:1070–1079.
    1. Perkins, M. , Howard V. J., Wadley V. G., et al. 2013. Caregiving strain and all‐cause mortality: evidence from the REGARDS study. J. Gerontol. B Psychol. Sci. Soc. Sci. 68:504–512.
    1. Institute of Medicine . Delivering high quality cancer care: charting a new course for a system in crisis. National Academies Press, Washington DC2013.
    1. Park, S. M. , Kim Y. J., Kim S., et al. 2010. Impact of caregivers' unmet needs for supportive care on quality of terminal cancer care delivered and caregiver's workforce performance. Support. Care Cancer 18:699–706.
    1. Evercare and National Alliance for Caregiving . Caregivers in decline: a close‐up look at the health risks of caring for a loved one. National Alliance for Caregiving, Bethesda, MD2006.
    1. Farquhar, M. , Higginson I. J., and Booth S.. 2009. Fast‐track trials in palliative care: an alternative randomized controlled trial design. J. Palliat. Med. 12:213.
    1. Callahan, C. M. , Unverzagt F. W., Hui S. L., Perkins A. J., and Hendrie H. C.. 2002. Six‐item screener to identify cognitive impairment among potential subjects for clinical research. Med. Care 40:771–781.
    1. Bakitas, M. , Lyons K., Hegel M., et al. 2009. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II Randomized Controlled Trial. JAMA 302:741–749.
    1. Bakitas, M. , Lyons K., Hegel M., et al. 2009. Project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions. Palliat. Support Care. 7:75–86.
    1. Bakitas, M. , Stevens M., Ahles T., et al. 2004. Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings. J. Palliat. Med. 7:363–372.
    1. National Consensus Project . Clinical Practice Guidelines for Quality Palliative Care. National Consensus Project for Quality Palliative Care, Pittsburgh, PA2013.
    1. Hegel, M. T. , Dietrich A. J., Seville J. L., and Jordan C. B.. 2004. Training residents in problem‐solving treatment of depression: a pilot feasibility and impact study. Fam. Med. 36:204–208.
    1. Unützer, J. , Katon W., Callahan C. M., et al. 2002. Collaborative care management of late‐life depression in the primary care setting: a randomized controlled trial. JAMA 288:2836–2845.
    1. McMillan, S. C. , Small B. J., Weitzner M., et al. 2005. Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer 106:214–222.
    1. McMillan, S. C. , and Small B. J.. 2007. Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial. Oncol. Nurs. Forum 34:313–321.
    1. Steinhauser, K. E. , Alexander S. C., Byock I. R., George L. K., Olsen M. K., and Tulsky J. A.. 2008. Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. J. Palliat. Med. 11:1234–1240.
    1. Steinhauser, K. E. , Alexander S. C., Byock I. R., George L. K., and Tulsky J. A.. 2009. Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life. Palliat. Support Care. 7:393–404.
    1. Weitzner, M. , Jacobsen P. B., Wagner H., Friedland J., and Cox C.. 1999. The caregiver quality of life index‐cancer (CQOL‐C) scale: development and validation of an instrument to measure quality of life of the family of caregiver of patients with cancer. Qual. Life Res. 8:55–63.
    1. Radloff, L. 1977. The CES‐D scale: a self‐report depression scale for research in the general population. Appl. Psychol. Meas. 1:385–401.
    1. Okun, A. , Stein R. E., Bauman L. J., and Silver E. J.. 1996. Content validity of the Psychiatric Symptom Index, CES‐depression Scale, and State‐Trait Anxiety Inventory from the perspective of DSM‐IV. Psychol. Rep. 79(3 Pt 1):1059–1069.
    1. Montgomery, R. , Gonyea J., and Hooyman N.. 1985. Caregiving and the Experience of Subjective and Objective Burden. Fam. Relat. 34:19–26.
    1. Montgomery, R. , Borgatta E., and Borgatta M.. 2000. Societal and family change in the burden of care Pp. 27–54 in Liu B. and Kendig H., eds. Who should care of the elderly? An east‐west value divide. World Scientific, River Edge, NJ.
    1. Kleinbaum, D. , and Klein M.. 2012. Survival Analysis, 3rd ed Springer, New York.
    1. Zimet, G. D. , Powell S. S., Farley G. K., Werkman S., and Berkoff K. A.. 1990. Psychometric characteristics of the Multidimensional Scale of Perceived Social Support. J. Pers. Assess. 55:610–617.
    1. Lyons, K. D. , Bakitas M., Hegel M. T., Hanscom B., Hull J., and Ahles T. A.. 2009. Reliability and validity of the Functional Assessment of Chronic Illness Therapy‐Palliative care (FACIT‐Pal) scale. J. Pain Symptom Manage. 37:23–32.
    1. McPherson, C. J. , Wilson K. G., and Murray M. A.. 2007. Feeling like a burden to others: a systematic review focusing on the end of life. Palliat. Med. 21:115–128.
    1. Lee, J. E. , Shin D. W., Cho J., et al. 2015. Caregiver burden, patients' self‐perceived burden, and preference for palliative care among cancer patients and caregivers. Psychooncology 24:1545–1551.
    1. Akazawa, T. , Akechi T., Morita T., et al. 2010. Self‐perceived burden in terminally ill cancer patients: a categorization of care strategies based on bereaved family members' perspectives. J. Pain Symptom Manage. 40:224–234.
    1. Chochinov, H. M. , Kristjanson L. J., Hack T. F., Hassard T., McClement S., and Harlos M.. 2007. Burden to others and the terminally ill. J. Pain Symptom Manage. 34:463–471.
    1. Inverso, G. , Mahal B. A., Aizer A. A., Donoff R. B., Chau N. G., and Haddad R. I.. 2015. Marital status and head and neck cancer outcomes. Cancer 121:1273–1278.
    1. Aizer, A. A. , Chen M. H., McCarthy E. P., et al. 2013. Marital status and survival in patients with cancer. J. Clin. Oncol. 31:3869–3876.
    1. Mahdi, H. , Kumar S., Munkarah A. R., Abdalamir M., Doherty M., and Swensen R.. 2013. Prognostic impact of marital status on survival of women with epithelial ovarian cancer. Psychooncology 22:83–88.
    1. Abern, M. R. , Dude A. M., and Coogan C. L.. 2012. Marital status independently predicts testis cancer survival–an analysis of the SEER database. Urol. Oncol. 30:487–493.
    1. Wang, L. , Wilson S. E., Stewart D. B., and Hollenbeak C. S.. 2011. Marital status and colon cancer outcomes in US Surveillance, Epidemiology and End Results registries: does marriage affect cancer survival by gender and stage? Cancer Epidemiol. 35:417–422.
    1. Pan, I. W. , Ferguson S. D., and Lam S.. 2015. Patient and treatment factors associated with survival among adult glioblastoma patients: a USA population‐based study from 2000‐2010. J. Clin. Neurosci. 22:1575–1581.
    1. Baine, M. , Sahak F., Lin C., Chakraborty S., Lyden E., and Batra S. K.. 2011. Marital status and survival in pancreatic cancer patients: a SEER based analysis. PLoS ONE 6:e21052.
    1. Brusselaers, N. , Mattsson F., Johar A., et al. 2014. Marital status and survival after oesophageal cancer surgery: a population‐based nationwide cohort study in Sweden. BMJ Open. 4:e005418.
    1. Pinquart, M. , and Duberstein P. R.. 2010. Associations of social networks with cancer mortality: a meta‐analysis. Crit. Rev. Oncol. Hematol. 75:122–137.
    1. Siddiqui, F. , Bae K., Langer C. J., et al. 2010. The influence of gender, race, and marital status on survival in lung cancer patients: analysis of Radiation Therapy Oncology Group trials. J. Thorac. Oncol. 5:631–639.
    1. Kroenke, C. H. , Kubzansky L. D., Schernhammer E. S., Holmes M. D., and Kawachi I.. 2006. Social networks, social support, and survival after breast cancer diagnosis. J. Clin. Oncol. 24:1105–1111.
    1. Yang, H. C. , and Schuler T. A.. 2009. Marital quality and survivorship: slowed recovery for breast cancer patients in distressed relationships. Cancer 115:217–228.
    1. Siefert, M. L. , Williams A. L., Dowd M. F., Chappel‐Aiken L., and McCorkle R.. 2008. The caregiving experience in a racially diverse sample of cancer family caregivers. Cancer Nurs. 31:399–407.
    1. Institute of Medicine . Dying in America: improving quality and honoring individual preferences near the end of life. National Academies Press, Washington, DC2014.
    1. Centers for Disease Control and Prevention . Assuring Health Caregivers. Kimberly‐Clark Corporation, Neenah, WI2008.
    1. Howlader, N. , Noone A., Krapcho M., et al. 2013. SEER Cancer Statistics Review, 1975–2010. National Cancer Institute, Bethesda, MD.

Source: PubMed

3
Subscribe